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    Old 01-17-2008, 06:49 AM   #31
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    Re: Newly diagnosed with fibro

    Christine,
    I get the same symptoms by doing the least little things too.
    last year was the last draw for me and I demanded my primary dr to do something to investigate what was going on with my body. when I went clothes shopping and was holding all the clothes walking around the store, I suffered tremendously the next day JUST from holding clothes.
    now THAT'S ridiculous! when that happened to me, I knew something was definetly wrong with me and that it was getting worst.
    all the time people on boards were telling me I had all the classic symptoms of fibro, but I was diagnosed with osteoarhritis and osteoporosis. I was never checked for fibro. I brought it up as a possible diagnosis to my dr and then he did an exam for it. and low and behold, he told me I had it.
    I lived with it a few years before actually pursuing a diagnosis of it.
    I wanted my rheumy dr to do an MRI of my spine and arms and everything because everything is hurting me. not just the areas of fibro.
    but he said why do an MRI when we know already that I have fibro?

    it's my body and I know that somehting else is going on. why else would I out of the blue sky wind up with a vitamin D deficiency. if your level goes too low, you can die from it. I want an answer as to why mine went down.
    I go in the sun, I eat all the right foods, yet I have this problem?
    this diagnosis can cause bone pain too.
    so there's a few things going on in my case.
    I have such sever bone crippling pain in my lower spine only when i sleep at night. it wakes me up and the numbness and severe pain in my arms where it hurts to bend them straight and the numbess where I have pins and needles in my left hand mostly wakes me up constantly too.
    there has to be something more going on than just the things I mentioned. but no one is investigating it. they just stop dead point.
    do I tell them to do more investigation?
    I'm afraid it will insult them.
    but the pain is spreading into my back left hip now where I can hardly walk when I get out of bed. it only lasts for alittle while but during the day sharp pain shoots thru the left hip at times when I walk.
    it's strange all these sensations going on and only getting worst.
    plus the pain in my neck. mostly the middle and left side. feels as if it's going to get stuck in one place. it hurts to turn it when driving too.
    so you see why I"m concerned that something more might be going on? or is this just normal symptoms for having fibro and osteo's?
    what is your opinion on my problem?
    anyone?

    thanks for listening.

    Linda

     
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    Old 01-17-2008, 06:59 AM   #32
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    Re: Newly diagnosed with fibro

    Linda,
    I'm so sorry you're in so much pain all the time. We here all know what it's like to be in come sort of pain, day in and day out. I, too, find myself questioning whether or not the doctors have basically given me a diagnosis that is a catch-all for my myriad of symptoms. I have a friend who has lived with Fibro for 10 years and she said she went through this as well, thinking that there has to be something more wrong with her. Although I think it's a normal thought process for people with fibro, my friend tells me to NEVER discount that there may be something else going on. Like you said, you know your own body. I find that in the medical community with the way that health insurance companies are so stingy with coverage, you have to really push to have additional tests done. If I were you, I would journal ALL of the symptoms that you described below and their frequency and meet with your doctor. Ask for more tests. If you don't ask, they won't pro-actively do it. And if you're having difficulty getting through to your doctor, find another one who will listen to you. No one should have to live with the debilitating pain you're going through without you being satisfied with the diagnosis.

    Hang in there-
    Christine

     
    Old 01-17-2008, 08:05 AM   #33
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    Re: Newly diagnosed with fibro

    I would like to address all of you concerning your fibro and no, I don't want you to think I am an expert because I am not. I will tell you that the pain in the bends of your arms probably are part of your fibro, why, because you have trigger points on your elbows. To the posters who are having problems in the neck and shoulder area, there are trigger points there also. The lower back area, there are trigger points there also. They are also in the hips. There are also trigger points at the top of your chest area and in the knees.

    I too, get the pins and needles feelings in my hands and feet. For this, I have a prescription of neurotin. It helps a little but not much.

    Have any of you had trigger point injections? I get them every 28 days and sometimes sooner if I am in alot of pain. They cannot give trigger point injections in the elbows, knees and chest because there is not a very good chance of hitting the trigger point. My pain doc does not use steroids in the injections. Sometimes it helps and sometimes it doesn't. Sometimes it causes me to end up in bed for a couple of days.

    Do any of you see a pain doc that believes in fibro?

    All of you have to be aware of what your body can do and what it can't. If you push it beyond what it can handle, you will pay the price. You have to accept this. It is not easy, believe me I know and I still don't accept it at times and then I pay for it.

    Sitting on concrete is not good for you. You will find that after a while, sitting for long periods of time may bother you, standing for long periods of time may bother you, laying for long periods of time may bother you.

    When I get up in the morning, I can barely move. My hips and legs don't want to move like I want them to move.

    It is a good idea to keep a list of all your symptoms and talk to your doctor... Learn about this horrible disease.... Take control of it. Some of you will learn that ice packs will help you when you are hurting and some will find that heat will help better. I myself cannot use ice at all but can use heat. Everyone is different.

    I suffered TIA strokes back in 2006, I also suffer with BiPolar 1, chronic myofascial pain, migraines, hypermobility, asthma and some scoliosis.

    There are quite a few good books at the library on fibro.... For those of you that are always very tired, as about Chronic fatigue syndrome as it goes along with fibro quite frequently. Another one is the chronic myofascial pain. Learn all that you can and educate yourself. The more you learn, the better questions you can ask your doctor.

    I know you feel like the doctors want to lump all your symptoms into this terrible disease however, alot of these symptoms are part of this disease. I know it is not what you want to hear because you think that this ONE HORRIBLE THING CANNOT POSSIBLE CAUSE ALL THESE THINGS but believe me, it can.

    Please remember that stress can cause a flare-up also. Some doctor's can be very degrading when it comes to your concerns... Example, my GP thought I had bonelock in my shoulder so he sent me to an orthopedic specialist... The specialist asked how long this had been going on and I said about 4 months, after looking at the xrays, he said well this is just a flare-up of your fibro, I asked how long he thought it would last, he said he didn't know and then had the nerve to ask me if I really thought my pain doc was going to cure fibro, I answered that I knew that there was not a cure for it and he said well then, there is your answer. Go home and put ice on it. I explained that ice caused more pain and he said well then, I guess you will just have to ride it out. Then he suggested I get a recliner because it would help me sleep better while this flare-up was going on. How nice. I didn't have the money for a recliner. That flare-up continued for another 3 months.

    I am not trying to scare anyone just to learn what your body can take and learn how to take care of your body. I have learned to save my body for the important things in life. I don't do anything, I don't go out of the house except to take my son to school and pick him up. Sometimes I even have to have my other son do it. The other thing I save my body for is to go to my sons basketball game whether I feel like it or not. I have to sit on bleachers which bothers me to no end.

    I learned from one of the books I read that if you make plans with someone, don't feel obligated to go. Make them aware that you may have to cancel at the last minute. Decide what is important and forget the rest.

    Another thing that goes along with the fibro is the fibro fog. This too shall pass. I get it all the time and I use to get so mad... Now when I forget things or take the wrong directons, you just say to yourself, fibro fog.

    The pins and needles feelings in your hands and feet, I know that too. I don't do dishes when it is really bad because I break more than I clean. It got so bad in my feet last week I told everyone I was going to take a sledgehammer to my feet and break them and that way I wouldn't feel the pins and needles anymore.

    Sorry for the rambling but just wanted to try and help some of you... If any of you have any questions, please feel free to ask. I do take many meds other than the neurotin and I wonder if any of you are on any medication yourselves for the fibro.

    Wishing you all a pain free day. Jenn

     
    Old 01-17-2008, 08:19 AM   #34
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    Re: Newly diagnosed with fibro

    Quote:
    Originally Posted by lintek45 View Post
    sorry you're not having a good time of it Jenn.
    things will get better on it's own time. it usually does and it seems though when you're in it, that it will never end. but it does, I promise you that.
    I forget now the things I had to endure when it was difficult. when you're in it, it seems like it will take forever to end or that it will never get better.
    life has a way of managing all by itself sometimes. it's hard to say don't fret, because one can't do that when you're mind is on so many stresses such as bills and owing money.
    are you considering going to a therapist and maybe getting on some type of medicine for your stress?
    did I already ask you this?
    it worked tremendously for me and I fought it for years. I didn't think I needed the medication, plus the idea of having to go to therapy was not the greatest plan for me either. but I have to say 3 years later now, I am a much happier and less stressed out person I was before.
    I am able to manage things that come my way easier without falling apart. there were times I just wanted to die. I used to fantasize about how I'd do it.
    there was this heavy dark veil over my eyes, like I was walking around like a zombie.
    about a few weeks after being on prozac, or paxil, I dont' know which one it was now, but all of a sudden I was able to see the little things in life again that were so amazingly beautiful. the chirping of the birds were loud enough fo me to hear them, I basked in the heat of the sunshine, where as before, all I wanted to do was go out to do what I had to do and get home as fast as I could.
    I began seeing the beauty of the outdoors again and I could feel the warmth of Spring coming and everything started to blossom. including my spirit.
    I felt dead and then all of a sudden I became alive again.
    that was my experience and I never want to go back to that horrible position I was before I started my m edication.
    I don't want you to take it as an insult that I'm suggesting therapy and medication. I'm only trying to suggest to you what helped me.
    believe you me, I had reasons to be stressed out too. lack of money and a job, bills galore, my kids were doing drugs and not coming home till the early mrning, one son I had to tell him to go and live with his dad because he wasn't abiding by our rules and we were very leinent. we were not strict in the least. so it wasn't like I was asking him to do everything.
    he refused to work, refused to help around the house and wouldn't even empty the garbage for us. it was the hardest thing I had to do was to tell him to go.
    plus my fiance was drinking heavily and making our lives impossible. god forbid If I said anything about his drinking. I'd find holes in the wall and my precious things broken. so I learned to try and keep my mouth shut when he drank and just go into my bdrm and pray that he didn't get mad to get him off on a mad rage.
    it was horrible. I remember crying in my car when I was alone and praying to God that he would help me.
    well he did. it took time though but he or it, definetly helped me.
    a total turn around for that matter.
    that's why I say that life has a way of working itself out. I learned how to detach myself from the situation so I wouldn't become directly effected by it emotionally. it was the hardest thing I've had to learn, but you do it for your sanity's purpose.

    good luck Jenn, and it was good hearing back from you.
    hang in there.

    sincerely,
    linda
    Linda - I don't ever want you to think I would ever take anything as an insult when you are so kind to try and help.... I do see a therapist, psychiatrist and pain doctor every month. I take many meds every day also. Just so you know last year after my TIA strokes, I told my husband to take me to the mental hospital here in town. I was losing it big time. That is when they finally diagnosed me with BiPolar 1. That was really hard considering for the previous 20 years I was treated for severe depression and generalized anxiety disorder. I had been misdiagnosed for over 20 years. After my little stint at the hospital, they set me up as a partial inpatient where I had to go for 6 hours a day for about 7 weeks. Then before they would discharge me from that I had to be set up with an appointment with my psychiatrist from the hospital plus an appointment with a therapist which I have been going to ever since. On top of all that, that is when the fibro got really bad. I have been on every drug you can imagine for the BiPolar and still haven't found the right med combo but I haven't given up. I take 27 pills per day. I think I posted everything earlier.... I will look back and see, if not I will repost. I take meds for BiPolar 1, anxiety, migraines, fibro, chronic myofascial pain.

    I also journal alot. It helps when I am really upset and need to get it out whether it is anger or being upset about the fibro pain.

    Thanks for your concern, I really appreciate it. Jenn

     
    Old 01-17-2008, 11:28 AM   #35
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    Re: Newly diagnosed with fibro

    Jenn,
    Thanks so much for your support. I'm new at dealing with this and I'm still trying to learn all of my flare-up "triggers." It's comforting to hear that someone else's pain is bothered when sitting on a hard surface for an extended period of time. You're right, I have the same result when I stand for a long period of time as well. Out of curiousity, what med do you take for your chronic myofascial pain? I have a feeling that my neck and shoulder pain is myofascial. I have some trigger points in there that when pressure is applied, the pain reverberates all the way down my arm.

    With everything that you're handling in terms of your health, I applaud you for knowing your limits and accepting them. I guess no one ever said we have to LIKE them, right?!

    Christine

     
    Old 01-18-2008, 06:49 AM   #36
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    Re: Newly diagnosed with fibro

    Quote:
    Originally Posted by christine07 View Post
    Jenn,
    Thanks so much for your support. I'm new at dealing with this and I'm still trying to learn all of my flare-up "triggers." It's comforting to hear that someone else's pain is bothered when sitting on a hard surface for an extended period of time. You're right, I have the same result when I stand for a long period of time as well. Out of curiousity, what med do you take for your chronic myofascial pain? I have a feeling that my neck and shoulder pain is myofascial. I have some trigger points in there that when pressure is applied, the pain reverberates all the way down my arm.

    With everything that you're handling in terms of your health, I applaud you for knowing your limits and accepting them. I guess no one ever said we have to LIKE them, right?!

    Christine
    Christine - I see a pain doc for the fibro, chronic myofascial pain and he prescribes the following: I am prescribed Lortabs 650 1 x per day, Robaxin (muscle relaxer) 1 tablet 4 times per day, mobic (anti-inflammatory) 1 tablet per day, neurotin 300 mg, 1 capsule 3 times per day. The neurotin is for the pins and needles feeling that you get in the hands and feet. I started out with 100 mg 3x per day and moved up within a month. At first I thought it was going to do the job. As I sit here right now, my feet feel like I have needles sticking in them. I also get the trigger point injections every 28 days but have went sooner when the pain is out of control. I have no problem getting shots however, when my doc hits a trigger point, I know it. If you have ever had them, its not like a regular shot, they have to put the injection in slowly and it is like they move the needle around after putting it in. After he is done with all injections, he then puts this oblong, slightly heated knob on each injection site and this makes the lidocaine go further down into the trigger point.

    Sometimes I think I should be a weather person as I usually know when it is going to rain or get cold 48 hours before it even gets here. That to causes a major flare up for me.

    I know it seems like I have accepted my limits however, we all sometimes refuse to accept them for different reasons thinking "Oh, we can do one more thing" No, I don't think any of us like to have this disease because there is so much of the unknown and so many people who don't understand it. Most people think we are fine because we look fine. It is hard alot of the times to make people understand our limitations. The hardest thing for me is when my son ask me to take him somewhere on the weekend at night time. I take meds at night that I refuse to drive on and it is hard for me to tell him no. But I must. I take many more meds then the ones listed above.

    My husband understands the fibro but I still don't think he understands the BiPolar as he has never had to deal with someone with a mental illness. I have tried over and over again to explain it to him and even bought books and gotten books from the library to no avail. He thinks when I go off at the flip of a switch the best thing is to walk away from me and leave me alone. That frustrates me even more. Enough of that.

    I hope this helps you in some small way... If you have any other questions, please feel free to ask. I wish you a pain free day. Jenn

     
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